Mornings like this I find myself floundering. For the second time with this illness, I find myself detached from the outside world. After months of striving to balance an ever- decreasing workload with an ever-increasing symptom load, I stepped back to make my health my number one priority, something which my body no longer deemed a choice. On the one hand, it feels reasonable to wait to return to “the world” once I can shower, prepare food, do therapeutic exercise, and otherwise maintain my day to day life with a reasonable symptom load. When I try to perform above my capacity day after day, and my symptoms are consistently high, quality of life suffers steeply.
Connecting with an online community of other “chronies” (as I’ve started saying) fosters both solace and insanity in my head. There are many success stories and endless promises that certain lifestyle changes, combined with acceptance of a new normal, can allow the ill to return to a semi-normal life. This gives me hope, and useful tools, but also leaves me frustrated that all of my efforts have not yet returned me to this elusive place of sustainable functionality. Some days I find myself frenzied, striving frantically to incorporate as many positive practices as possible. If I do four types of meditation daily, a variety of therapeutic exercises, maintain a consistent eating and sleep schedule, manage my emotions, and check off the boxes next to the list of patient management techniques, then I should get better, so these things say, and so I say to myself. So I practice being a model patient. For months and then for years. And yet here I am. This is not to say I haven’t improved in symptom management, the books and techniques I’ve found helpful have become my new holy canon, and I a devout follower, acting with no little amount of faith in the unseen promise of the holy grail. But I still face moderate to severe, disabling symptoms on a daily basis. So what am I doing wrong? Perhaps I’m over emphasizing The role of the illness in my life. Some literature suggests I have become over-identified with the role of being sick. If I can change my perspective and adjust my life to build up other identities, my perception of my pain and illness will adjust so that it is no longer such a strong force in my life, they say. And yet, my bodily capacity has comprehensively redefined my sense of self. It is a force that binds my body in ways that willpower and positive management cannot cure, and that requires immense determination to maintain basic activities of daily living (think getting clean, eating, maintaining home, etc).
So still, I find myself running circles and tying myself in knots as I fight daily to obtain a sustainable life and symptom load. As I grasp for certainties, I realize the fallacy of trying to obtain concrete answers for the situation. I’m struggling to gain control over (an) illness(es) that are poorly understood in the scientific and Lay communities. Everyone, myself first and foremost, wants the patient to return to functional daily living, involving activities of self-care and work. The onus for obtaining this model of success often falls on patients, who must at once accept long-term changes, yet also strive to minimize the negative effects of these changes on themselves, their loved ones, and broader society. This is not to say that the patient is powerless or that pain and illness management techniques are not helpful. However, obtaining positive coping skills does not eradicate illness, and emphasis on patient management can cause the unintended effect of patient blame, including self blame, for lack of concrete improvement. The body, which was once taken for granted, is now the target of myriad, often contradictory, suggestions that promise the patient return to normalcy. When these fail or fall short, the onus of blame too often falls back on the now problem patient, rather than the broader lack of understanding and knowledge about the illness and human body itself.
So as I chase myself in circles, striving daily to transform my own illness experience into a success story, I wonder where there might be room for a little more compassion and a little less frenzied grasping. Can we gain a greater sense of control by accepting that this is not a force which we truly can control? Most success stories seem to emphasize a patient over-coming or surpassing their role as a patient. Might there be space for a success story of a patient who is simply coming to terms with the bodily limitations of illness, and it’s consequent emotional and social repercussions? Is there an opportunity for a patient to be successful by doing their Best to adapt, cope and accept their new reality simply as it is today — not with hopes for a different and more functional future, but rather a growing respect and honoring of the bold endurance and courage that it takes to embark on each new day as an unknown bodily-bound Journey over which we do not have complete control? And Can we create gray space in the medical model for the patient who lives in the undefined, ungraspable, incurable space between sick and well?